Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Disappointed

Guest stef 4 dogs

By Guest stef 4 dogs
in Introduce Yourself / Share Stuff

Recommended Posts

Guest stef 4 dogs
Guest stef 4 dogs
Posted

I have to say today was my first day signing on. I was really hoping to meet people with similar problems to relate too. Instead I feel locked out! I haven't had any responses to anything! Guess new commers are not welcome! I don't have anyone to relate too that has this disease. I feel like an intrusion to your secret club instead of someplace to come to seek answers. Not a very good forum for any discussion.....

Stef 4 dogs

cujolu@msn.com

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


jenvan Collaborator
jenvan
Posted

Wow Stef, I'd say that is a very unfair judgment. I think this place is very welcoming! I think the majority of peeps check posts at night. And your only thread was on weight loss supplements, which is a very specific topic, and considering most of the people here have been under weight, there is probably only a minority familiar with diet supplements. Be patient...I have had threads that didn't get very many answers either. We're all in this together, hope you choose to stick around!

IronedOut Apprentice
IronedOut
Posted
I have to say today was my first day signing on. I was really hoping to meet people with similar problems to relate too. Instead I feel locked out! I haven't had any responses to anything! Guess new commers are not welcome! I don't have anyone to relate too that has this disease. I feel like an intrusion to your secret club instead of someplace to come to seek answers. Not a very good forum for any discussion.....

Stef 4 dogs

cujolu@msn.com

Hi - I think I responded to your weight loss Q on the wrong thread. :unsure: I'll try and repost. I'm an asymptomatic Celiac and at first found some of the info and responses didn't match my needs. But the more I search and post, the more I find that helps. Please think about giving it another try.

Julie

jerseyangel Proficient
jerseyangel
Posted

Hi Stef--I saw your post, but had no experience with diet pills, so I really did not have any input for you. Like Jen said, maybe tonight when more people are on, someone will weigh in. This forum is not in any way a closed group--everyone is welcome here and we do our best to try and help when we can and make newcomers feel welcome. Especially with a specific question like yours, you need to give it a bit more time--that way more people will have a chance to see it. :)

DingoGirl Enthusiast
DingoGirl
Posted

Oh dear....did you not get my reply? I responded to your pm, I think it was yesterday, wrote a rather lengthy message. Let me know if you got it or not, it seems to me some people are having trouble with private messaging.....

I was diagnosed just one week ago and cried for the first three days. Thought life was over. But, after 6 days of being gluten-free, I feel really wonderful. Somehow not as lonely, I do take comfort from the posts here and I am VERY new as well. I think it just takes time, and patience, but take heart, I think we will feel much much better, in so many ways! I already feel like a different person! :)

Guest nini
Guest nini
Posted

I swear I replied to your post about weight loss supplements...

Every time I come on to check this board there are literally hundreds of new messages to sift through. I work and am a busy mom of a five year old who also has Celiac... sometimes it takes a while for people to see your posts and for the right people to respond to them... (those being someone who would have something to say about the subject)...

This is not a live chat room where things happen instantly, please don't feel like you are being ignored, most of us try to get to the newbies and welcome you as soon as possible, we really try.

ianm Apprentice
ianm
Posted

It depends upon what time of day you post and what question you are asking. In a forum like this it can take a while for a response.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cgilsing Enthusiast
cgilsing
Posted

Hi Stef -

I hope you give this board a second try! Sometimes it just takes time for people to see your posts, or like someone else said if we don't have experience with a specific issue we may not respond to it. Overall I think this board is a great asset and really one of the best groups I have seen! Everyone is always willing to offer suppport, and rarely have a I seen judgmental attitudes around here.....actually I think I am more comfortable talking about such subjects as poop and gas on this board than I am with my Dr. :P I know sometimes it can be frustrating if you are looking for answers and they are slow in coming....but hang in there...no one is intentionally ignored around here!

Judyin Philly Enthusiast
Judyin Philly
Posted
I have to say today was my first day signing on. I was really hoping to meet people with similar problems to relate too. Instead I feel locked out! I haven't had any responses to anything! Guess new commers are not welcome! I don't have anyone to relate too that has this disease. I feel like an intrusion to your secret club instead of someplace to come to seek answers. Not a very good forum for any discussion.....

Stef 4 dogs

cujolu@msn.com

Stef,

I'm so sorry about you not getting responces. Please don't feel alone.

I think most have said the reasons for it.

I found when I first went on the forum 4 months ago it was so hard to figure out where to put the question.

I don't know how to figure out where you made your original post, but people who are interested and have knowlege in a area will go to those threads. Did you post your question under medicines?...was it about diet aids..or diet pills? See, I would have skipped by that even if you were new because if i saw it, which i didn't, i would have gone on knowing someone who knows about that issue could be of more help.

I've had 2 posts on 1 for a week and one all day today and 18 people looked at it but didn't post.

Please bear with us. I have rec'd so much help here. I don't know your health issues but I'm over weight, not like most on board but have lost weight just going gluten-free I hope I could help alittle and make yu feel less alone.

:)

Judy in Philly

psawyer Proficient
psawyer
Posted

Aside from this one, you have started two other threads: Any Guidelines for Losing Weight and Kellog's Corn Pops. They have had 22 and 5 replies respectively, as of a few minutes ago. I have not read them, so I can't comment on whether the replies were useful, or even on topic. But you have not been ignored.

Sometimes it takes a while before somebody who has the answer you need sees your post and responds.

We all face the challenge of avoiding gluten, and we share our ideas freely and without judging each other (okay, there are a small number of exceptions to that).

DingoGirl Enthusiast
DingoGirl
Posted

Um, wait a minute....where is that Kellogg's Corn Pops information? My heart is pounding......can I really eat those? :rolleyes: that would make me extremely happy, and replace my pretzel habit :( at night.....

Guest nini
Guest nini
Posted
Um, wait a minute....where is that Kellogg's Corn Pops information? My heart is pounding......can I really eat those? :rolleyes: that would make me extremely happy, and replace my pretzel habit :( at night.....

sorry to burst your bubble, but no, Kellogg's Corn Pops are not safe, they contain Wheat Starch... they used to be safe, but some "genius" decided to "improve" them and added wheat starch about a year ago... some Dr.s are still handing out information to the contrary.

Rusla Enthusiast
Rusla
Posted

Sorry Stef...I have not seen your posts, I can't even remember yesterday. However, I have no info on weight loss supplements.

Give it some time. I have had lots of things that don't get answered and that is because if no one knows the answer or has experience with that particular thing, they won't answer.

darlindeb25 Collaborator
darlindeb25
Posted

Well Stef--I am guilty of not reading in this forum everyday--I belong to so many other forums. I dont know anything about diet drinks and probably wouldnt try any because of not knowing the ingredients to be safe.. Jen, I must add here that most celiacs are not wieght loss victims. It truthfully runs about half and half. Some of us dont lose when sick because our bodies over conpensate for the problem and the fat stays. We are just as unhealthy as the skinny ones, but in a different way. When I went gluten-free, I lost 60# in the first few months--I was very happy about it. Email me anytime with questions..anyone and everyone--just put in the subject line--celiac forum. Sorry you felt left out hun--Deb darlindeb25@aol.com

Nantzie Collaborator
Nantzie
Posted

I just looked at the topic, and it sounds like you're more used to chats than message boards, so I can see how you'd be a little offended when nobody acknowledged your post. Message boards are a whole 'nother thing.

This next bit everybody might find boring, but I think it's really cool.

Message boards are really interesting because they're kind of a throw back to the olden days when there was usually one telephone in a town, usually in the general store. They would put a bulletin board next to the phone. When someone would call the shopkeeper would answer the phone. So say a guy named John Smith lives in the area. His brother Bill calls to tell John that they're coming to visit next month and want to know if John wants their Dad's old fishing pole. The shop keeper would write the message down and pin it to the board. A few days later Bill calls back to see if John's been in to answer the message. Shopkeeper checks the board, and no he hasn't. A week later John's at the store he checks to see if there are any messages, and sees the message from his brother. Then he writes on the paper that yes he does and his wife wants their grandma's blueberry pie recipe. A few days after that, Bill calls and gets the answer and says okay. Shopkeeper writes okay on the paper, and the next time John's in he sees it. Topic complete.

One of my friends has a sister who lives way, way WAY up in the mountains, and they do this the exact same way still. They would have to pay to have phone lines put in up their road, and don't have the money to do that. So for local stuff they use a CB, and for phone calls they drive into town. It's still really common where they live to do it like that.

Also, with this celiac message board, your messages aren't "pinned" on the board right away. Especially when you're a new member. Since this is a moderated board, the moderators have to approve messages before they show up. (Cuts down on spammers and such.) If all the mods are busy sometimes your post won't even show up for a while.

For the first week or so I was on here, I couldn't understand why the topics I posted were taking so long to show up, sometimes a day or more. But then when they finally popped up, there would be a bunch of replies.

BUT... There's a way you can see all the pinned and unpinned messages. Right next to the "My Controls" link, there's a link called View New Posts, which will give you all the topics since you logged on, regardless of them being pinned or not.

Well, hope you stick around.

Nancy

  • 3 months later...
lindalee Enthusiast
lindalee
Posted
I have to say today was my first day signing on. I was really hoping to meet people with similar problems to relate too. Instead I feel locked out! I haven't had any responses to anything! Guess new commers are not welcome! I don't have anyone to relate too that has this disease. I feel like an intrusion to your secret club instead of someplace to come to seek answers. Not a very good forum for any discussion.....

Stef 4 dogs

cujolu@msn.com

I am new on this forum also - I have learned so much here. Everyone has been so helpful. Hang in there - it has taken me awhile to figure how to get around the site but I am learning. LindaLee

  • 8 months later...
gbrad71 Newbie
gbrad71
Posted
Hi Stef--I saw your post, but had no experience with diet pills, so I really did not have any input for you. Like Jen said, maybe tonight when more people are on, someone will weigh in. This forum is not in any way a closed group--everyone is welcome here and we do our best to try and help when we can and make newcomers feel welcome. Especially with a specific question like yours, you need to give it a bit more time--that way more people will have a chance to see it. :)

What a beautiful kitty! Yours?

jerseyangel Proficient
jerseyangel
Posted
What a beautiful kitty! Yours?

Yes--thank you :)

His name is Allo and he's 15 years old. We just love him to death!

He recently went gluten-free himself (easier for me to deal with-he loves it), hence the "sidekick". ;)

Welcome to the board! :)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold. Our bodies have difficulty absorbing and utilizing it. Only 30% is absorbed and less can be utilized. There's some question as to how well multivitamins...
    2. Scatterbrain
      - Scatterbrain replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

      I am taking a multivitamin which is pretty bolstered with B’s. Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol. Started Creapure creatine monohydrate in June for athletic recovery and brain fog. I have been working with a Nutritionist along side my Dr. since February. My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t ...
    3. knitty kitty
      - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies. It's worth talking to a dietician or nutritionist about. Did you get a Marsh score at your diagnosis? Was your tTg IgA level very high? These can indicate more intestinal damage and poorer absorption of nutrients. Are you eating...
    4. knitty kitty
      - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      34

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Vitamin and mineral deficiencies can make TMJ worse. Vitamins like B12 , Thiamine B1, and Pyridoxine B6 help relieve pain. Half of the patients in one study were deficient in these three vitamins in one study below. Malabsorption of vitamins and minerals is common in celiac disease. It's important to eat healthy nutrient dense diets like the Autoimmune...
    5. Celiac.com Sponsored Post
      0

      Recently launched Daura Non-Alcoholic Named One of the Best in the World by Forbes

  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,313
    • Most Online (within 30 mins)
      7,748
    Gailsie
    Newest Member
    Gailsie
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Feel like I’m starting over

      By knitty kitty · Posted

      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.   Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.   Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.   We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.   The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse. "My symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell." I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.   A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/
    • Scatterbrain
      Feel like I’m starting over

      By Scatterbrain · Posted

      I am taking a multivitamin which is pretty bolstered with B’s.  Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol.  Started Creapure creatine monohydrate in June for athletic recovery and brain fog.  I have been working with a Nutritionist along side my Dr. since February.  My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t know the exact number since it was so high).  All my other labs were normal except Sodium and Chloride which were low.  I have more labs coming up in Dec.  I make my own bread, and don’t eat a lot of processed gluten-free snacks.
    • knitty kitty
      Feel like I’m starting over

      By knitty kitty · Posted

      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies.  It's worth talking to a dietician or nutritionist about.   Did you get a Marsh score at your diagnosis?  Was your tTg IgA level very high?  These can indicate more intestinal damage and poorer absorption of nutrients.   Are you eating processed gluten free food stuffs?  Have you looked into the Autoimmune Protocol Diet?  
    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Vitamin and mineral deficiencies can make TMJ worse.  Vitamins like B12 , Thiamine B1, and Pyridoxine B6 help relieve pain.  Half of the patients in one study were deficient in these three vitamins in one study below. Malabsorption of vitamins and minerals is common in celiac disease.  It's important to eat healthy nutrient dense diets like the Autoimmune Protocol Diet, a Paleo diet that has similarities to the Mediterranean diet mentioned in one of the studies.   Is there a link between diet and painful temporomandibular disorders? A cross-sectional study https://pmc.ncbi.nlm.nih.gov/articles/PMC12442269/   Nutritional Strategies for Chronic Craniofacial Pain and Temporomandibular Disorders: Current Clinical and Preclinical Insights https://pmc.ncbi.nlm.nih.gov/articles/PMC11397166/   Serum nutrient deficiencies in the patient with complex temporomandibular joint problems https://pmc.ncbi.nlm.nih.gov/articles/PMC2446412/  
    • Iam
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Iam · Posted

      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.